As tick populations expand across the United States, so do the presence of Lyme patients. That is why in 2019, a group of dedicated advocates and Lyme disease foundations came together to support a new initiative to grow federal funding for Lyme disease. Bay Area Lyme Foundation, Alexandra Cohen, Project Lyme and Laure Woods saw the need to create a new organization and became founding charter members. Since then, the number of members have grown significantly as support for positive change grows. If you are interested in becoming a member, you can learn more here.
Congressional Lyme Series
Center for Lyme Action hosted their 2nd major event of the year on Tuesday, June 22nd. Bonnie and Jeff Crater, co-founders of the center, opened discussion by outlining the organization’s methods for creating change in the nation’s capital. With the recent addition of full time lobbyist Meredith Faucette, it was clear that Center for Lyme Action is ready to leverage additional attention Lyme has received from its similarities to the COVID-19 pandemic.
Ticks don’t care what your political association is
Jeff Crater, Co-Founder of Center for Lyme Action
Recently, Congress passed an additional $10 million increase to NIH funding for Lyme research. This brings the total for 2021 to $81 million and also brings hope for a continued wave of support. With administration changes occurring after the election last year it is clear that the Center for Lyme Action will be required to work on both sides of the aisle. “Ticks don’t care what your political association is”, said Jeff Crater. Lyme advocates are not at liberty to care either. In order to raise the support needed to implement systemic change, there needs to be cooperation from everyone.
The event featured a myriad of pre-recorded remarks from Congressional Representatives including Tina Smith (MN), Susan Collins (ME), and Anna Eshoo (CA-18), showing that federal engagement with Lyme disease continues to grow.
Most notable was long-time Lyme champion, Senator Collins. Addressing the elephant in the Zoom room, she directly outlined the theme of the event stating that Lyme has become the “first epidemic to emerge as a result of climate change”. Global temperatures continue to rise meaning more areas are becoming hospitable for ticks and for longer periods. Specific to her home state, she referenced that “climate change has brought ticks to Maine…even to the most northern regions”.
Additionally, Senator Collins mentioned that Lyme disease has been diagnosed in every single state. As there is a common misconception that you can only be bitten in endemic areas, it is a very critical piece of awareness information. Hopefully, continued re-education about Lyme at a Federal level results in a nationwide cultural change around the understanding of tick-borne diseases. For example, the CDC recently updated its website acknowledging that cases are likely 10 times higher than previously reported. This is a huge step in the right direction and will hopefully result in more people recognizing that tick borne diseases are much more prevalent than they may realize.
No one agency will be able to solve this crisis
Dr. Rachel Levine, HHS Assistant Secretary of Health
Health and Human Services also shared a pre-recorded message. Dr Rachel Levine, the HHS Assistant Secretary of Health, began by introducing the Lyme X initiative. This recently established partnership will “accelerate Lyme Innovation progress and strategically advance tick-borne-disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry, and government”. These partnerships are critical in achieving measurable success. “No one agency will be able to solve this crisis,” said Dr. Levine. She reiterated that it will take the cooperation of everyone involved to achieve Lyme X’s mission. Following the event, Bonnie Crater, Co-Founder and Board Member of Center for Lyme action reiterated the importance of having Dr. Levine involved. Bonnie said “we were thrilled that the new HHS Assistant Secretary for Health, Dr. Rachel Levine, is so supportive of the LymeX Innovation Accelerator program and is so knowledgeable about Lyme disease. Being from Pennsylvania she knows what a frustrating and debilitating disease Lyme can be, so we are grateful to have support at such a high level in the executive branch of government.”
There was also discussion about the Lyme X roundtable held in April with several stakeholders in the community. This roundtable was part of the LymeX Innovation Accelerator and helped create inclusive strategies for patient-driven research and patient-driven innovation by leveraging emerging technologies and novel research methods for Lyme disease. Recently, HHS released the report in partnership with the Center for Open Data Enterprise (CODE). The report details the Patient-Driven Innovation track producing “new insights and ideas for a range of innovative opportunities that can help individuals with Lyme disease and the public. Roundtable participants discussed digital tools to track ticks, identify Lyme infection, and track and report symptoms.” They also suggested ways to “improve surveillance information to understand the spread of Lyme disease better”.
Is Lyme Disease the First Epidemic of Climate Change?
After the pre-recorded remarks, the event moved to a live Q&A session featuring several notable names in the Lyme world including Mary Beth Pfeiffer, Dr. Kristen T. Honey, Dr. Michal Tal and Dr. Charlotte Mao.
One of the main questions posed was “Is Lyme Disease an Epidemic?”. Mary Beth Pfeiffer, author of Lyme Disease: The First Epidemic of Climate Change was the first to respond. “I call it the first epidemic of climate change” she said, but went on to elaborate that it could also accurately be referred to as an endemic. Lyme qualifies as both an epidemic and endemic. This is because epidemics are prevalent, damaging, and grow quickly, and what endemic are an underlying disease that is here to stay. With its rapid expansion across the country, Lyme is currently at the intersection of both. Tick-borne diseases are entrenched in the environment, and they are moving into more areas of the world and carrying more pathogens than ever before.
But how exactly does climate change affect the spread of Lyme? Dr Kristen Honey, Chief Data Scientist at the Office of the Assistant Secretary for Health discussed how climate change is affecting tick-borne diseases from multiple angles. This includes warming temps and increasing humidity which lead to more ticks. Additionally there is a lot of habitat fragmentation which results in less apex predators which has congruently expanded populations of carrier animals. More ticks, which have more hosts such as deer, mice, and birds.
Dr. Michal Tal, Ph.D., an instructor from the Institute for Stem Cell Biology and Regenerative Medicine at Stanford Medicine ended the program by addressing the science of treating patients. She spoke on a variety of issues facing medical professionals of tick borne disease including lack of education, especially in emerging regions. On a positive note, there is a lot of opportunity for the medical community to make strides in the way they address chronic Lyme disease. With it spreading to all areas of the country, patient subsets became large and less heterogeneous. This will allow researchers to develop more accurate archetypes of patient journeys and help medical professionals better identify and address Lyme in its earliest stages.